Transition to adult services for children and young people with palliative care needs : a systematic review

Objective: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. Design: Systematic review Setting: Child and adult services and interface between healthcare providers. Patients: Young people aged 13 to 24 years with palliative care conditions in the process of transition. Main outcome measures: Young people and their families’ experiences of transition, the process of transition between services and its impact on continuity of care, and models of good practice. Results: 92 studies included. Papers on transition services were of variable quality when applied to palliative care contexts. Most focused on common life threatening and life limiting conditions. No standardised transition programme identified and most guidelines used to develop transition services were not evidence based. Most studies on transition programmes were predominantly condition-specific (e.g. cystic fibrosis, cancer) services. Cystic fibrosis services offered high quality transition with the most robust empirical evaluation. There were differing condition-dependent viewpoints on when transition should occur but agreement on major principles guiding transition planning and probable barriers. There was evidence of poor continuity between child and adult providers with most originating from within child settings. Conclusions: Palliative care was not, in itself, a useful concept for locating transition-related evidence. It is not possible to evaluate the merits of the various transition models for palliative care contexts, or their effects on continuity of care, as there are no long-term outcome data to measure their effectiveness. Use of validated outcome measures would facilitate research and service development

Knowledge and information needs of informal caregivers in palliative care : a qualitative systematic review

Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994–November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research. Given a variety of approaches to palliative care research, a validated systematic review methodology for assessing disparate evidence was used in order to assign scores to different aspects of each study (introduction and aims, method and data, sampling, data analysis, ethics and bias, findings/results, transferability/generalizability, implications and usefulness). Analysis was assisted by abstraction of key details of study into a table. Results: Thirty-four studies were included from eight different countries. The evidence was strongest in relation to pain management, where inadequacies in caregiver knowledge and the importance of education were emphasized. The significance of effective communication and information sharing between patient, caregiver and service provider was also emphasized. The evidence for other caregiver knowledge and information needs, for example in relation to welfare and social support was weaker. There was limited literature on non-cancer conditions and the care-giving information needs of black and minority ethnic populations. Overall, the evidence base was predominantly descriptive and dominated by small-scale studies, limiting generalizability. Conclusions: As palliative care shifts into patients’ homes, a more rigorously researched evidence base devoted to understanding caregivers knowledge and information needs is required. Research design needs to move beyond the current focus on dyads to incorporate the complex, three-way interactions between patients, service providers and caregivers in end-of-life care setting

'The last resort would be to go to the GP'. Understanding the perceptions and use of general practitioner services among people with HIV/AIDS

In England and Wales, departments of Genito-Urinary Medicine have led the clinical response to HIV infection and AIDS (HIV/AIDS). They provide an open-access self-referral service on a basis of strict confidentiality. People with HIV/AIDS have been found to be reluctant to involve their general practitioner (GP) in their care. Previous research has not investigated their decisions about service use in the context of their broader strategies for coping with the multiple psychological and social challenges, which are posed by HIV/AIDS as a chronic, stigmatised condition. We report a depth-interview study of twenty people with HIV/AIDS in a low-prevalence non-metropolitan urban area of England. Their health care choices were products of complex judgements. Five concerns predominated: expertise, security, rights to care, confidentiality and the maintenance of normality. Transfer to GP care signified a transition from essential wellness to essential illness and represented a loss of biographical continuity. Their other concerns express problems of information management, which are universal features of stigmatising conditions. These may be heightened in the case of locally provided services, where any leakage of discrediting information is likely to impact directly on everyday life. These concerns should be understood and respected in policy initiatives to develop services.HIV/AIDS General practitioner services (primary care) Service utilisation Confidentiality Stigma Biographical disruption

A tale of two (low prevalence) cities: social movement organisations and the local policy response to HIV/AIDS

In the field of HIV/AIDS, social movement organisations (SMOs) have been identified as powerful potential catalysts for change through their impact on formal organisational structures and the policy process. In addition, they have the capacity to be important providers of services in their own right, through the community resources they are capable of mobilising. In the United Kingdom, however, their role in policy formation is disputed. Previous studies have concluded that they have been most influential at national policy and ward level. At the level of local policy making, their influence has been found to be patchy and confined largely to securing recognition of HIV as an issue. Most previous research has, however, been conducted in high prevalence, metropolitan settings with functional SMOs. This paper presents the results of a comparative case study of two neighbouring provincial low prevalence district health authorities (HAs) in England. We describe the changing national policy context from 1986 to 1995 and use a strategic change model to analyse the local development of care and treatment services for people with HIV/AIDS, in particular the relationship between SMOs and HAs. Despite being demographically, socioeconomically and epidemiologically similar, and sharing an identical national policy framework, the two districts demonstrate completely divergent organisational responses to the HIV/AIDS epidemic. We conclude that the level of prior social movement mobilisation and the degree of receptivity for change within the HA are the key variables for explaining variations in the scale of strategic change observed in the two districts.HIV/AIDS health policy social movement organisations strategic change